Where has all the anger gone?

Anger has become a big factor driving politics. It is giving rise to ideas, across the political spectrum, that until recently seemed unfathomable. Spilling over from social media, public discourse has become more vivid, more polarising. Anger is all the rage. And yet, in a field where you might expect it to be most acute, it appears notably absent: dementia. Lecanemab and donanemab are approved by regulators around the world as safe and effective treatments to slow the progression of Alzheimer’s disease. And yet in a succession of countries in Europe and beyond have seen payers say no. Approval has opened the door, but access remains closed.

Resource driven choices

Regulatory approval alone often means the wealthy can access treatment. Wealth gives you freedom to make your own judgment, on safety and efficacy, on whether the benefits of treatment outweigh the impact and inconvenience of frequent infusions. Being wealthy doesn't make you any better at making medical decisions than a person on the street. Wealth gives one freedom, but it isn’t unlimited. If a treatment were unsafe or ineffective, no one would be able to access it. It would be unethical to treat someone, whatever their wealth, with an intervention that was ineffective. That is why we have regulators to determine what is safe and effective. 

Given none of us lives in a country where resources are unlimited, and most of us are not super wealthy, we need payers who can determine whether a treatment is effective enough to justify its cost. Medicine has its heroes. But, as in any field, it also needs those who make the system work. Health care needs payers as much as it needs undertakers. It is an unfortunate job. But someone must do it.

It is not to downplay the difficulty of the payer decision, or to question, country by country, the decisions that have been made. But it is to illuminate what sits at the heart of those decisions: resources. If resources were unlimited, treatments would be paid for. 

Resource decisions are political decisions.

Public expenditure is under huge pressure everywhere: rising health costs, a post-Covid debt hangover, geo-political disruption, the dual challenge of navigating AI and ageing. On top of that we live in an era of fairly anaemic economic growth. It is not exactly a barrel of laughs being a finance minister right now. Health systems must make tough choices about what they will pay for. But it is a choice.

The cost of treatments is not unaffordable. To take one example, the UK’s total public expenditure is about £1.3 trillion. It spends about £200 billion or so on health services. Politics is, at its core, an argument about how to divide the cake. Spending more on treatments will constrain other choices. But the cost of treatments alone is not going to cost sums that will capsize the ship of state. 

Particularly because, in jurisdictions where there is coverage, there has not exactly been a stampede of patients and the worried well to the clinician’s door. As public awareness of dementia has increased, and health systems have improved diagnostic pathways, there is some evidence that people are presenting earlier in the disease trajectory and receiving diagnoses earlier. But the first generation of treatments has not, yet at least, dramatically shifted patient behaviour.

So, where’s the anger?

What is baked into resource-restricted health systems is a tussle between the payer and, for want of a better term, the disease community, from bench scientists through to patients. Payers inevitably restrict treatments. And the community demands access. What is surprising, bizarre even, in the dementia space is not the decision of payers but the reaction of the community. It's the general acquiescence to payer decisions. In an era where anger comes to the fore, where its pulsating energy is shaping political discourse, why does it appear so noticeably absent here? 

The dementia community are not the payers, they are not the finance ministers. There are those that want to unpick the regulators' decisions, debating around safety and efficacy. But unless you say regulators made the wrong decision, you are, fundamentally, defending a position that only the rich can access treatments. To adopt the lyrics from Fiddler on the Roof “If I were a rich man … I would now be getting treated for Alzheimer’s”. It is hardly a comfortable policy position.  

Why has the field been so accepting of access refusal? Perhaps it was the botched launch of aducanumab. Perhaps it is professional debate that has, at times, bordered on the paternalistic. Perhaps there is genuine public scepticism about the benefits. Or perhaps it is about the patients: an in-built ageism about the value of treatment. But we should not expect a moment to arrive when an innovation, in diagnostics or treatments, is so indisputable that everyone agrees it should be paid for. There will be continual debate. Which is why it matters that we understand and reflect on how we arrived here — in the short term as these decisions are live, and in the long term, as similar challenges continue to emerge, including how you build and leverage the power of the dementia community. 

New diagnostics and treatments change how people perceive the disease, they change how health systems interact with the disease, but they also will change how advocacy operates. The World Dementia Council is exploring how advocacy evolves in the era of treatments. But to conclude with the lines of a wonderful short poem by Yeats. “I being poor have only my dreams, tread softly because you tread on my dreams”. For someone with Alzheimer’s now, if they are not a rich man, they have but dreams. Dreams that they can have that bit of extra time to spend with their loved ones. We tread on those dreams. Does that not deserve a bit more anger?